H is for Hospice
…and for Holy sh*t we’re not ready for this!
Count me among the people who had no idea what hospice actually was before it was in my face. When my Dad died, he quite literally, went from 60 to zero, on skis, then hung on for a few days on life support. It was traumatic, brief and conclusive. As reiterated in many posts (including “Help, Not Wanted”) our family had had zero discussions about end- of-life care with my parents or with each other while they were healthy. In Dad’s case there was no need for it.
Both of my parents did have advanced directives in their wills, but in the kind of boilerplate language that seemed likely to have been skimmed before moving through the rest of the document and signing it. They had never specifically expressed verbally or in writing any particulars, like wanting to die at home, or of having some minimum acceptable quality of life beneath which they did not want to live.
Hospice certainly never came up. I wasn’t even clear on what hospice meant. Was it an actual place--a halfway house where they only serve soup and morphine, and where you could bleed out from a paper cut because they don’t even have BandAids? Was it a state of being, whereby “going into hospice” was like going into some grim solitary trance between worlds; Did it mean slowly starving to death while some nuns watched? Did being in Hospice mean being removed from interaction with the outside world?
I just didn’t know.
WHAT IS HOSPICE ANYWAY?
Now, in defense of my ignorance, the dictionary describes hospice as: “a home providing care for the sick or the terminally ill.” That definition stems from the way death went down traditionally, with the sick and the elderly being cared for in homes by the community. Today hospice is not a physical place (though it can also be that), but a range of services.
In its simplest terms, hospice is a program that provides special care to people who are near the end of life and have stopped treatment to cure or control their disease. That care includes physical, emotional, social, and spiritual support for patients and their families.
The modern hospice movement, as we know it now, started in England in 1967, when Dame Cicely Saunders—appalled at what was standard for end-of-life care when caring for her own father—established St Christopher’s Hospice. It was an actual place in London, a home-like setting that prioritized comfort and quality of life for people facing terminal illness and their families. Dying with dignity, with as little suffering as possible, was an alternative to spending one’s end of life either neglected or in a cold hospital surrounded by whirring, beeping machines and strangers in white lab coats.
The concept spread to the US in the seventies, thanks in part to the work of Dr. Elisabeth Kubler-Ross. She interviewed 500 dying patients for her 1969 book, “On Death and Dying.” The book delineated the five stages of grief—Denial and isolation, anger, bargaining, depression and acceptance. It opened up real conversation around compassionate end-of-life care, and the need for support to guide you through those five stages of grief instead of leaving you stuck, alone and bewildered, in the first four. By 1982, Medicare covered Hospice services to anyone with a terminal diagnosis and less than six months to live.
HERE’S THE RUB
The Medicare benefit for hospice includes pharmaceuticals, medical equipment, 24/7 access to care, nursing, social services, chaplain visits, grief support and other services the hospice agency deems appropriate. It’s a screaming deal. Who wouldn’t want to sign up for that kind of assistance? And yet, even mentioning the word Hospice throws people into a panic. I know because I was one of those people.
Why the resistance? To get Hospice benefits a person must opt out of curative treatments for their disease, which gives Hospice its bad rap. Going into hospice is equated with giving up or even accelerating death. The word carries so much fear because for many people, being evaluated for hospice is the first time they have spoken openly about death. Of course it is scary. Of course it feels easier to stay in the Denial/Isolation stage rather than looking under the hood and seeing how death works; but it also keeps you in a place where you’re lonely, sad and totally unprepared for what’s coming.
Now that I talk to people about their experiences caring for someone terminally ill, I have yet to meet anyone who wishes they held off on Hospice care longer. It is always the opposite. In most cases, it’s hard to see the downside. It also has no set timeline. Some people are in hospice for a day or less before they die. Some people may be in hospice for a year or more. You can even get out of hospice if your condition improves. One friend of ours, who was quite ready to join his wife on the other side, was irate that he kept getting kicked out of hospice for his good health.
You can still get medical attention in hospice, but not curative treatment. So, yes to Band Aids, and even antibiotics if they relieve symptoms or pain. But no to chemo, or crazy surgeries or invasive treatment that has you spending more time in the hospital and getting on an ever longer list of medications.
THE ALZHEIMER’S PLOT TWIST
Hospice experts urge people to start the conversation about end of life issues, including hospice, as early as possible, and certainly when people can clearly communicate their wishes. (PS here again I will put in a plug for “Being Mortal” by Atul Gawande. I wish everyone would read it!)
Alzheimer’s is a terminal disease, but typically with a slow and unpredictable course. Some people may live with it for more than a decade. Considering the six month life expectancy requirement for hospice, it isn’t even part of the conversation during most of any person’s Alzheimer’s journey.
I don’t recall anyone talking about hospice with us—what it was, let alone the possible benefits of it. Case workers may indeed have mentioned it, but if so it had resonated like Charlie Brown’s teacher…a bunch of “wah wah wah” in the background that seemed totally irrelevant. With no way for Nina to communicate her wishes, talking about her end of life wishes didn’t seem relevant. Until it was.
READING AND MISREADING SIGNS
There started to be days where Nina didn’t get out of bed, or refused all food, prompting a flurry of worry and emails. Then, just as suddenly, she’d bounce back and be her cheerful, willing self. To everyone else, the writing on the wall was clear. My kids, full-time students on the other side of the country, knew that they had likely seen Nina for the last time. Eva on her last visit, when she lay next to Nina who never woke up the entire time, figured it would be their last meeting. Those of us closest to her, however, hadn’t taken the time to actually envision what the end might look like. We had no frame of reference for this next stage, so when the word “Hospice” first came up, it felt sudden and catastrophic—like the floor dropping out of that spinning centrifuge room at the fair. In reality, those added services would be a huge relief.
But…I wasn’t there yet, and apparently, neither was Nina.
Nina’s cycles of crises and remarkable recoveries became an emotional rollercoaster. Jean suggested that perhaps she was hanging on out of some sense of duty. “Maybe we need to give her permission to die,” Jean had suggested on one of our frequent calls. She had made a special trip up from LA during my next visit so we could be together with Nina. Nina mostly dozed, while we sat in her room and chatted, but then woke up and came to attention. Jean looked into her eyes and softly said, “Nina, we’re all going to be fine. It’s ok for you to go.” Nina, who had not uttered a word, and barely managed a smile during the entire visit thus far, perked right up. In a voice clear as day she asked excitedly, “Oh where are we going?”
Jean and I shot each other a look and she shrugged. “I guess she’s not ready.”
UP NEXT: The Beginning of the End